How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

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Artist: Zeraph Dylan Moore

There is no test that is officially-recognized to “prove” someone has ME or CFS. However, some doctors and patients find the tests on this page to be helpful.

This page was put together to help people applying for disability. If you are not planning to apply for disability, you may not find these tests to be as helpful, as many people are diagnosed based on symptoms and ruling out other conditions. Information on finding a doctor and getting a diagnosis are at the bottom of this page.

Cognitive Testing

Many people report that cognitive testing was helpful for documenting issues with memory, focus, concentration and cognitive function.

This may also be called Neuropsychiatric Testing or Neuropsyhological Testing or Neurocognitive Testing. Here’s the story of how Amaryllis Took a Cognitive Test. And here’s how Iris Took a Cognitive Test

Tilt Table Tests

A tilt table test is a test used to document changes in blood pressure and heart rate for patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Some readers report that beta blockers or other medications can interfere with the test results. Here’s how Iris Took a Tilt Table Test

Some people who cannot get a tilt table test, instead try the NASA Lean Test (a “poor man’s tilt table test”). It does not require special equipment and any doctor can do it if they are willing. Some people have had success printing out the form and instructions, bringing it to their doctor, and requesting a special appointment to perform the test.

CPET

The CPET test is used by some people in disability claims. Sometimes this works out great, and sometimes people have regrets. There are two kinds of CPETS (one day and two day) and they are very different. Learn more about the pros and cons of the CPET.

The CPET test is often used by people applying for disability through their employer’s insurance. Here’s How Dahlia Used a CPET to win disability through her employer. And here’s How Iris Got a CPET. Lavender figured out a way to get many of the benefits of a CPET without all of the drawbacks: Lavender Solves the Problem of the CPET

Brain Scans

There are several different types of brain scans people have found helpful in documenting ME and related conditions: SPECT and xenon SPECT scans of the brain, MRI scans of the brain, PET scans of the brain and EEG/QEEG brain maps. The Hummingbird Foundation Testing for ME explains each of these tests. You can read the short explanations or the long explanations.

Blood work

There is no specific blood test that is universally recognized as accurately measuring CFS or ME. However, the links at the bottom of this page include blood tests and other types of medical tests that some patients and doctors have found helpful. EBV blood work is a common one.

Tests from the Social Security Ruling

The Social Security Ruling for Chronic Fatigue Syndrome includes a list of tests that can be helpful for applying for disability. These include some of the tests mentioned on this page, as well as sleep studies, EBV bloodwork, exercise stress tests, and several other tests.

In addition, the ruling recognizes “any other laboratory findings consistent with medically-accepted clinical practice.”  So, any of the other tests on this page also has the potential to be helpful. This ruling is for disability applications in the US. Most other references on this page are international.

Related Conditions

If you think you may also have Lyme Disease, POTS, Fibromylagia or other conditions that are common in ME patients, please check out how to How to Collect Medical Evidence for Other Conditions


What Helps?

🌸 Which tests helped the most for disability applications? Good question. We took a survey. Most responses were from the US. What medical test was the most helpful for your disability approval?

🌸 Which of these tests helped people the most for their health or for general knowledge? Cort Johnson from Health Rising asked 800 people this question. Here is their list of Which Tests Helped the Most (click on “View results” to see what everyone answered).


Finding a Doctor

🌸 Many people are not able to travel or afford to see a specialist, and are diagnosed by their general practitioners. Some people find it helpful to bring their general practitioner information on ME and review it together.

🌸 If you would like to try to seek out a doctor with special knowledge of CFS or ME here are the MEAction list of doctors and Colleen Steckle’s list of doctors. If you would like to try to seek out a doctor with special knowledge of Lyme, check out the ILADS Doctor Search

🌸 If you are applying for disability in the US, we asked people What doctor was the most helpful for your disability approval?


Getting a Diagnosis

🌸 If you are applying for disability in the US, you may find it helpful to check out the Social Security ruling on: How to Establish a Diagnosis of Chronic Fatigue Syndrome

🌸 For getting a diagnosis internationally, check out: How Colleen Used the ICC to Finally Get a Diagnosis that Fit

🌸 There are also several primers written for doctors in the list at the bottom of this page.


I’m applying for disability/I’m on disability. How Many Tests Do I Need?

Good question. How many tests do you need?


What If My Tests Come Back “Normal”?

You are not alone. Many people with CFS and ME test “normal” on standard medical tests. How Come My Lab Tests All Say Nothing is Wrong?


What If I Can’t Afford Tests?

In the US, check out How To Get On Medicaid Even if You Can’t Get On Medicaid and How to Get to the Doctor When You Can’t Afford the Doctor. There are also some resources for discounted lab tests here: How To Be Broke & Medicated


Lists of Tests

🌸 The Hummingbird Foundation website includes a: Short list of names of tests, plus a longer summary of each test, plus an even longer detailed explanation of each test.

🌸 The Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners includes a long list of tests. On page 10 there is a worksheet that can be filled out by a doctor. This booklet is written for doctors, so it’s going to be difficult for us normal folks like us to understand.

🌸 A lists of tests is available on the website for the Treatment Center for Chronic Fatigue Syndrome. They also publish a longer guide explaining tests in more detail.

🌸 The IACFSME published an ME/CFS Primer for Clinical Practitioners that includes a long helpful list of tests.

🌸 Katherine T Owen has compiled an excellent list and explanation of various Chronic Fatigue Syndrome tests on her blog Healing CFS/ME (keep scrolling down, the list is in the middle of the page). Includes special information on laboratory testing in the UK.

🌸 The ME/CFS Roadmap for Testing and Treatment was created by an ME/CFS patient. It includes excellent, detailed information on testing and interpretation of test results.

🌸 The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis includes a list of tests for ME, plus tests for related conditions that occur in ME patients.


Updated August 2017. Please share your comments and suggestions below. Please let us know if any links on this page stop working. 

1 thought on “How to Get Tested for Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”

  1. Re: “No tests for CFS”

    Please obtain a copy of Osler’s Web by Hillary Johnson.
    Look on page 136, paragraph one.

    Like

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